Jeff is one very special young man! He has a rare syndrome called CHARGE Syndrome. He has faced many life threatening conditions and surgeries in his life. He is such a fighter and has blessed many lives with his strong, beautiful spirit. He is deaf/blind and non-verbal and deals daily with many challenges.
He is 29 yrs. old and is a very happy young man with a fun sense of humor.

Saturday, January 3, 2009

Both have come and gone! I had a GREAT Christmas! I loved all my toy gifts. Of course, I had most of them destroyed before the end of the day, but that is part of my loving them. It was a rather unusual Christmas this year because my Mom was really sick. She'd been fighting a slight cold for a couple of weeks, but then she got really sick 2 days before Christmas. She tried to get in to see the doctor, but his office was closed. She spent Christmas morning laying on the couch watching me open my presents. Dad made me breakfast and after I ate, I got my Christmas stocking. WOW, more neat things! I loved it. However, there were no pictures taken, no yummy treats to eat, or Christmas dinner like there usually is. Mom spent the day in bed and the next day (Friday) the doctor said she now had a secondary infection, so he gave her an antibiotic to take for her really bad Sinus infection. She started feeling better on Monday, but then on Tuesday she started feeling worse and was running a fever again. The Doctor's office was closed on Wednesday & Thursday, so on Friday she went into the doctor again. He said it has now gone into her chest and she has Bronchitis. So now she is on yet another antibiotic and waiting to start feeling better.

I've enjoyed my time with her being sick. I do pretty much whatever I want. I've laid around and watched a lot of TV. I've been pretty good to her, by keeping myself entertained. When Dad is around he keeps me supplied with my balloons, tape, string, and M&Ms. I really like giving him orders and when ever he comes to check on me, I always sign a list of things that I want for him to get for me. Yes, I pretty much have it made right now! Sure was a different kind of Christmas and New Year around here though. Ahh, but there is always next year to look forward to!

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About Me

Jeff is one very special young man. He was born with CHARGE Syndrome. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

To find out more about CHARGE Syndrome

Note From My Mom

As Jeff's Mom, I feel so very blessed to have this choice young man to love, care for and serve daily. He is a delight and has been my greatest JOY and CHALLENGE rolled into one terrific young man. Jeff has touched more people and overcome more in his short life than most people do in a lifetime. What an example and inspiration he is. He is my mentor, my hero, my teacher. I truly believe Jeff is one of those special spirits that was sent here just to teach others. I know he certainly has taught me what's most important in this life. He has taught me so much and continues to do so daily. Because of Jeff, and wanting to help him grow to be the best he can be, I feel I have probably gained the equivalent of an honorary degree in medicine, education and law. At times it's been extremly hard, and at times it's been much easier. But I can truthfully say, it's been worth every tear I've shed, every ache in my heart, every fight I've had to fight. The smiles, the laughter, the love, and the strength of my son have made it all worthwhile. I am so grateful and thankful to my Heavenly Father for the blessing of this choice young man!